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Conversations With Prostate Cancer Experts


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Cancer and Finances Don’t Mix, but There is Hope: Jamie Bearse

Mr. Jamie Bearse is the President and CEO of ZERO — The End of Prostate Cancer (www.zerocancer. org). ZERO is a United States-based nonprofit with a mission to end prostate cancer.

Mr. Bearse talks to us about prostate cancer and finances.

It’s frightening to hear that you have cancer. A prostate cancer diagnosis can be devastating physically, mentally, emotionally, and financially. Coping with a shocking diagnosis is only made more complicated by having to make important decisions and coping with the costs that come with those decisions.

Stress and anxiety over fighting prostate cancer and choosing the best treatment pathway are complicated enough. Many patients also struggle to meet the financial burden that comes with cancer. Out-of-pocket costs to fight cancer are a significant barrier to survival as studies show that cancer patients are two-and-a-half-times more likely to declare bankruptcy than those without cancer. In addition, one out of three patients turns to family and friends for financial support during their cancer journey. These economic struggles can cause treatment nonadherence and lifestyle changes that can worsen a patient’s outcome.

I frequently hear from patients about their financial struggles in their prostate cancer journey. There are countless stories about men dropping off treatment to keep their family’s financial future secure or families moving into campgrounds because they lost a home to the financial burden of fighting cancer. But enough is enough. We’re taking action.

We created ZERO360 a free, one-on-one comprehensive patient support program designed to help men find financial aid and other resources that best fit their individual needs. ZERO360 is a patient navigation program that connects patients with trained case managers who can help them find copay and other financial assistance to address medical debt and other costs incurred during treatment. This can include free or reduced treatment access, financial support for treatments through copayment, coinsurance, premium or deductible assistance programs, insurance navigation and benefit help, as well as resources for cost-of-living support among other assistance on a case-by-case basis.

ZERO360 helps the men who need it the most. Over the last 18 months, more than 830 men have benefited from the program, with more than $570,000 in financial relief secured for patients. From the newly diagnosed to men who have been battling their disease for years—many are Stage IV patients on a combination of expensive therapies—this is the type of comprehensive support that men need. Whether they need help understanding coverage options, finding sources of financial aid, or resolving issues with private insurance, ZERO360 case managers are trained professionals who are experts in addressing needs and identifying resources for men.

In addition to ZERO’s comprehensive program, additional resources are available to help men access their prescribed treatment as well as pay for any ancillary expenses. Programs that help with prescribed medications include patient assistance (free drug) programs that provide free product for uninsured and underinsured patients; charitable copay assistance program that provide assistance to federally and commercially-insured patients; and manufacturer copay cards that provide assistance to commercially insured patients. There are also organizations that often have funds available for copay assistance, treatment, transportation, and other ancillary expenses. You can find a full list of available resources on our website at http://www.zerocancer.org/ financial-resources.

When considering treatment and the cost of care, it’s important to learn as much as possible about treatment costs, insurance options, and other treatment-related expenses. No matter where a man is on his prostate cancer journey, there are resources available to help. Call 844- 244-1309 (toll-free) to get started with ZERO360.

You never have to fight prostate cancer alone; we’re here for you, every step of the way.

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Clinical Trial: Sex After Stereotactic Ablative Body Radiotherapy

Dr. Neil Desai, an Assistant Professor of radiation oncology at the University of Texas Southwestern Medical Center, specializes in treating genitourinary cancers.

Prostatepedia with him about his clinical trial looking at erectile dysfunction in men after nerve sparing stereotactic ablative body radiotherapy (SABR) for localized prostate cancer.

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What is the thinking behind your clinical trial?

Dr. Desai: The focus on sexual dysfunction after treatment for prostate cancer is not a new one. We have gotten better about cure rates, risk classification schemes using genomics and other clinical factors, and about managing urinary and rectal side effects.

Sexual dysfunction after treatment, however, remains a common reality that we force men to accept with preparation that is never sufficient. It’s an especially mean kind of change when you’re talking about men who are at the point of their lives where they’re becoming able again to focus on themselves— maybe the kids are out of the house and they’re in their last five to 10 years of potency. Then you take that away from them.

This glaring deficiency in progress and a nihilism about ways to address it seemed to my collaborators and me to contrast against large strides in imaging, treatment precision of radiotherapy, and understanding of the key anatomy mediating sexual dysfunction after radiation.

In particular, there is apparent synergy from improved localization of clinically significant disease within the prostate gland by MRI, ability to deliver radiation with precision in the millimeter range, and introduction of a rectal spacer gel that allows freedom to focus on sparing other nearby anatomy like vessels and nerves involved in sexual function. Armed with these complementary advances, we aimed to try again to tackle the problem of sexual dysfunction.

Thus, we can’t really say this is a novel idea. We simply believe we are at an inflection point where technology has shifted just enough where we can look back at a good question from 10 years ago but with better technology and understanding to maybe make more of a difference.

What can a man expect to happen in your trial?

Dr. Desai: Before entering the trial, we critically interrogate a man’s disease and sexual function to make sure we can safely and meaningfully offer them a potential benefit for enrolling. The main question is do they have a disease that’s amenable to a dose de-escalation design? Can we at least de-escalate the intensity of treatment on at least one side of the prostate in an effort to spare the nerve bundles there, as well as some critical vessels that may relate to sexual function—or is their disease too close to be safe? Did the rectal spacer gel insertion adequately displace the rectum to allow us the luxury to consider de-escalating a neurovascular bundle and other vessels opposite to a man’s dominant disease?

Once satisfied, these requirements are met, the man is randomized to either standard SABR, or an SABR technique that will de-escalate the dose to the side of the prostate opposite dominant disease and next to a neurovascular bundle. As there may yet be clinically indolent disease below the MRI threshold of detection in this region, we are still treating the prostate in this area to a minimum dose we feel can still address such lower grade disease.

The dose de-escalation technique will be used in half the patients, and they will not know which arm they are in (blinding), in order to preserve the integrity of the assessment of whether this technique actually reduces sexual dysfunction.

Men will then be followed per standard follow-up at regular intervals with PSA testing, exam and quality of life questionnaires assessing changes in sexual function and medication requirement.

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Dr. Mohit Khera: Treating ED

Dr. Khera, a urologist specializing in male infertility, male and female sexual dysfunction, and declining testosterone levels in aging men, is the Director of the Laboratory for Andrology Research and the Medical Director of the Executive Health Program at Baylor College of Medicine in Houston, Texas.

Prostatepedia spoke with him recently about current and emerging approaches to erectile dysfunction (ED) after prostate cancer.

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Khera

Why did you become a doctor?

Dr. Mohit Khera: Originally, I was a healthcare analyst. I did my MBA and then worked as an analyst in Boston for two years. I realized that it wasn’t very satisfying for me. I really wanted to be able to help other people and to help patients. I went to medical school and became a doctor. I have never looked back. It’s the best decision I ever made.

There’s something very gratifying about being able to help other people, particularly those who are in need and are in pain or hurting.

Have there been any particular patients who’ve changed how you see your role as a doctor or how you view the art of medicine?

Dr. Khera: There are numerous patients who stand out in my mind, particularly those who have suffered from prostate cancer and are trying to recover their lives, whether it be in terms of sexual function, incontinence, or even just keeping the cancer from coming back. It’s very challenging. These patients just

who is not very skilled or who does not do robotic prostatectomy quite frequently, their ED rates tend to be higher than someone who does the procedure on a regular basis. Surgeon skill is critical.

Typically, radiation does have a lower rate of ED initially, but several years down the road, the rate of ED can catch up and accelerates past the rate of ED from surgery.

We know that in androgen deprivation therapy (ADT) when you drop testosterone values, the risk for ED is significantly increased. Many studies show that you start losing nocturnal erections when the testosterone levels fall below 200. That’s exactly what happens when you give men ADT: ED rates should go up significantly.

Does erectile function come back after a man goes off ADT?

Mr. Khera: Yes, many times it does come back. The only problem is that not all men have their testosterone levels bounce back into the normal range after they stop ADT. Some men will actually have testosterone levels that remain in the low range. Of those men in whom levels do go up, whether they build up naturally or through testosterone supplementation, many will experience improvements in their erectile function once again.

Is there anything a man can do before treatment to prevent problems or reduce problems after treatment?

Dr. Khera: The concept of penile rehabilitation has been up for debate in my field. There are those who are proponents and those who don’t believe that it will help. I personally believe that penile rehabilitation is effective and will help patients recover their erectile function faster and more effectively.

In my program at Baylor College of Medicine, I start patients two weeks prior to the surgery on daily Cialis (tadalafil). I teach them how to use the vacuum erection device as well because I want them to use it after surgery. I check their testosterone levels before surgery, as some studies have shown that the testosterone levels do go up after a prostatectomy.

I also teach them the concept of penile injections just in case they need to use them after surgery if they’re not able to recover their erectile function.

There is a lot of counseling that goes on before the surgery. I put them on certain medications. I’m trying to prepare them for the surgery and to keep their tissue healthy and in the best condition possible.

There are a lot of doctors, though, who don’t do that kind of thing and who don’t talk about penile rehabilitation. Some aren’t even comfortable talking about ED with their patients except in the most cursory way. What would you say to a patient who’s encountered that? Should he go see someone who is a specialist in ED?

Dr. Khera: I think that patients should voice their opinions. If you look at this field 20 years ago, you realize there are three things that occur. A man wants to make sure that he gets his cancer out; he wants to make sure he can still get good erections; he wants to make sure that he’s not leaking urine after the procedure. Those are the three big categories of patient concerns.

In the past, many surgeons just focused on getting the cancer out and felt patients should be grateful for that. Yes, you may have some ED or incontinence, but we saved your life.

But now patients are very savvy and are demanding more. They’re demanding that they should have their cancer out and also have great erections and no incontinence after the procedure.

I think it’s very important when a patient has a diagnosis of prostate cancer that he discuss all three of these categories with his surgeon. They should discuss outcomes and the surgeon’s skill. They should discuss how many cases that surgeon has performed in this field.

Some patients in smaller communities don’t have access to doctors with your experience. Are there online resources for men in that position?

Dr. Khera: I think one of the best online resources is at http://www.sexhealthmatters.org. They have a phenomenal website with lots of literature and education on sexual medicine and rehabilitation. It’s an excellent resource that I share with my patients.

What about men who have already been through treatment and are suffering from ED? Which approaches seem to be most effective after which prostate cancer treatments?

Dr. Khera: There are many treatment options available to men with ED following a radical prostatectomy. The most common treatment options are PDE5 inhibitors. Those are called phosphodiesterase inhibitors—Viagra (sildenafil), Levitra (vardenafil), Cialis (tadalafil), and Stendra (avanafil).

These medications are very useful. Many of us give these medications on a daily basis to help men recover the nerves and penile tissue. I think it’s important.

Men can also use a vacuum erection device, which is exactly what it sounds like. It’s a vacuum that induces an erection. A band is placed at the base of the penis to maintain the erection.

Men can also use an injection therapy. We spend an hour in the office teaching them how to inject themselves with a very small diabetic needle. They inject into the base of the penis a solution that causes a very rigid erection. Then very early on they can start engaging in sexual activity.

I believe psychologically it’s very important that men start engaging in sexual activity early after surgery; it has a large psychological impact not only on the patient but also on the partner.

Other therapies include urethral suppositories called MUSE (alprostadil). These are placed into the urethra and dilate the penile tissue to give an erection.

Finally, I would say one of the best treatment options for many men is a penile prosthesis. We do perform this procedure. We place a penile implant into the penile tissue and a pump into the scrotum. Men can then pump saline into their penile tissue to induce an erection.

Isn’t it dangerous for a man to begin sexual activity soon after surgery? Is there any risk to him?

Dr. Khera: Typically in our practice, we like men to wait at least one month so that all the sutures heal and there is no risk of injury with the urethral anastomosis. We encourage men to start engaging in sexual activity one month after surgery.

Do you have any advice for men who are either worried about ED before going into treatment or who are struggling now?

Dr. Khera: There are two important things men should realize. First, prior to going into any type of treatment for prostate cancer, you should discuss ED outcomes with your doctor. Ask them what success have they had with ED. What is their plan for managing the ED if it does develop after the procedure?

Second, men who are already suffering from ED should know that there are excellent treatment options available. Men do not have to live with ED following a radical prostatectomy.

There are new treatment options emerging. We have started two studies, one with stem cell therapy. We take stem cells from men and inject them back into the penile tissue, with some benefit. We have another therapy called low-intensity shock wave therapy, in which we deliver shocks to the penile tissue. It does help recover erectile function.

There are many new treatment options on the horizon.

We’ve spoken about stem cell therapy before. I think you were just starting a trial.

Dr. Khera: I finished that trial and am now starting a Phase II trial. This first trial went extremely well. We’ll begin recruiting patients at the end of this year.

What we did not discuss last time was shock wave therapy. That has been out for multiple years and has gained a lot of success and media in the United States. Some of your readers may have seen commercials for it. We believe at this point that shock wave therapy should be used only in a research protocol until more data is available.

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Erectile Dysfunction + Cancer

Dr. David Houchens introduces this month’s conversations about erectile dysfunction for prostate cancer.

I have 35 years of experience in preclinical and clinical cancer research. I started having PSA tests done when they first became available and noted that my PSA was going up over time. Ultimately, I had a biopsy in 2001 that was positive for prostate cancer with a Gleason score of 7 (3+4) and with positive margins. The gold standard for treatment at that time was to have a nerve-sparing prostatectomy. Mine was an open surgery because robotic surgery was not readily available in 2001. After a number of months, my PSA did not go to nondetectable, and it started a slow but steady rise. With the treatment guidance of Dr. Charles “Snuffy” Myers, the PSA rise was slowed significantly and held in check for three years. After that time, a steady rise led to a year of androgen deprivation therapy (ADT). As expected, the PSA became nondetectable; however, nine months after going off ADT, when my testosterone started rising again, so did my PSA. The newer scans available in the US today were not available in 2008, so I flew to the Netherlands for a Combidex scan to locate possible areas of spread. One distant node area was found that was suspicious. Back in the US, I had salvage radiation plus ADT. In addition to the usual treatment of the prostate bed and surrounding area, the suspicious area plus some areas found with color Doppler ultrasound were also radiated. Since that time nine years ago, my PSA has remained nondetectable and, of course, I will continue to have regular PSA checks throughout my life. My wife has been a very supportive caregiver and has participated in my decisions and treatments. She and I have been active in support groups and in leading discussions on intimacy at support groups and conferences.

The conversations in this month’s issue of Prostatepedia point out the problems that many men have with side effects after their treatment for prostate cancer. Although most urologists and radiologists mention the possibility of incontinence and erectile dysfunction (ED), the usual statements indicate that those issues are probably transient and clear up over time. Some follow-up programs include penile rehabilitation but this is usually only available in large academic centers and thus not accessible to a large number of the cases throughout the country. At the time of prostate cancer diagnosis, most men focus on combating the cancer and assume that they can manage any side effects. It is only later that they realize some of those effects have become a life-long matter.

In this issue of Prostatepedia, Drs. Khera, Burnett, and Kaplan give clear summaries of the approaches that can be used to treat ED after surgery or radiation. One thing most men do not realize is that ED can be the result of conditions other than treatment for prostate cancer. These include diabetes, heart condition, blood pressure issues, obesity, and age. These comorbidities need to be considered in treatment. If men have some degree of ED prior to prostate cancer treatment, recovery will not lead to fewer effects of ED than the patient had before treatment. There are suggestions in the conversations of what should be discussed with your doctor prior to prostate cancer treatment, and these should include addressing side effects as well as experience with the selected therapy. As with any medical or surgical treatment, if you do not feel comfortable with your physician, you may want to consider finding one who can address your questions comfortably and has the expertise and experience to give excellent care for your condition.

Also in this issue is a conversation with a patient, Brian M. He gives a clear description of what he went through on his prostate cancer journey including penile rehabilitation and therapy for ED. Much of what he experienced is seen by a number of men facing this diagnosis, although each case has its own issues, and there are not necessarily common factors for each man. He points out the advantage of having a spouse or partner go with you to medical appointments since the questions and answers heard by the caregiver can sometimes be different from those heard by the patient. He also found his participation in a local support group to be helpful.

An important conversation in the issue is with a caregiver, R. She describes what she and her husband went through with ED after his treatment. Since prostate cancer has been described as “a couple’s disease” due to the effects on intimacy, it is important for the man and his partner to be fully aware of what to expect with the side effects from, not only the surgery or radiation but also the longer-term effects that may exist especially with additional therapy such as ADT or chemotherapy. The selection of a doctor should not be based solely on expertise with the primary treatment but also their knowledge and ability to discuss and manage side effects.

In most cases, there is not a critical need to have treatment immediately, so there is time to study and read information on the disease and to talk to others who have or are going through treatment. For those with high-grade, more aggressive cancer, treatment may be necessary more quickly. In those cases, a medical oncologist who specializes in prostate cancer should be brought on the team.

Here are some points to consider when addressing your next steps after a diagnosis of prostate cancer:

  • Ask for copies of all medical records (such as lab tests, scans, and treatment notes) and keep those in a file or binder.
  • Take a spouse/partner with you to medical appointments.
  • Make a list of questions to ask when meeting with the doctor or medical team.
  • Talk to the doctor or medical team about any side effects you are having related to procedures or medications.
  • Ask clear questions about what to expect regarding ED and incontinence, including what treatments are suggested or used to reduce the effects or to aid in correcting the problems. If you do not feel comfortable with the responses or the fact that the physician does not consider these as something to worry about, you may want to consider a second opinion or different doctor.
  • Attend a support group if there is one in your geographic area. If not, participate in a phone support group.

Here are some suggested resources for support:

  • Visit Us TOO [http://www.ustoo.org/] to find a support group. Each state is listed with information on meeting time, place, and contact person.
  • If you are not near a local support group, the link to a nationwide phone support group is https:// http://www.ancan.org/support-calls. There are calls specifically for early-stage and more advanced-stage prostate cancer and a separate call-in for caregivers.
  • Us TOO International-Prostate Cancer Support and Education has a private women-only Facebook page called “A Forum for Her.” Women can join by contacting TerriL@ustoo.org.

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Talking About Erectile Dysfunction

In September, we’re talking about erectile dysfunction after prostate cancer treatment.

Many men with prostate cancer have concerns about the potential impact of treatment on their sexual function, whether they voice those thoughts or not. This isn’t vanity: sexual function—or the loss of it —can cut to the heart of what it means to be a man for many. Who am I if I can’t function as I have always have? What does it mean for my marriage—or if I’m not married, my ability to attract a partner? Or more fundamentally: what does it really mean to be a man?

This is why each year, Prostatepedia dedicates an issue to discussing erectile dysfunction with prostate cancer experts, men with prostate cancer, and patients’ partners. The treatment options don’t really change much from year to year, but the openness with which men and their significant others talk about these issues is in evolution—or rather: revolution. More doctors are also talking about steps men can take before and after treatment to help function return at a faster clip. Pay particular attention to the advice our experts give this month.

For the first time, our Guest Commentary features a patient who also happens to be a former cancer researcher and an active member of his local UsTOO support group. Dr. David Houchens offers his thoughts on dealing with erectile dysfunction after prostate cancer and offers some valuable resources you may want to review.

Drs. Arthur Burnett and Mohit Khera each help us put erectile dysfunction after prostate cancer into context. They offer insight into which treatments might be effective and outline the pros and cons of each.

Dr. Irving Kaplan talks to us about erectile dysfunction after radiation

Dr. Neil Desai talks about his clinical trial on sex after stereotactic ablative body radiotherapy.

Dr. Sarah Hawley discusses her work on self-managing side effects like erectile dysfunction in prostate cancer patients within the Veterans Administration.

Mr. Jamie Bearse of Zero – The End To Prostate Cancer talks about the financial impact a prostate cancer diagnosis can have.

Brian M discusses his own struggles with ED after treatment and the impact it had on his marriage.

Finally, R. gives us a spouse’s perspective and offers her own advice for caregivers.

It used to be that both patient and doctor were uncomfortable even bringing up erectile dysfunction after cancer. Shouldn’t I just be grateful that I’m alive, many would think. Certainly, this is still true for some— but as with many things in our world, things are changing.

The bottom line is that if you are struggling, no one can help you if you don’t talk about what’s happening first: with your partner, with your friends, and most importantly with your doctor.

Silence is a dead end.

Read this month’s conversations about erectile dysfunction after treatment.


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Dr. Snuffy Myers On ED After Treatment

In September, we’re talking about erectile dysfunction after prostate cancer treatment.

Dr. Charles Snuffy Myers frames this month’s conversations.

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Most men with prostate cancer have concerns about sexual function because diminished erectile dysfunction is a frequent side effect of the most widely used treatments. Additionally, as men get older they often have issues with erectile dysfunction even if they do not have prostate cancer. In fact, prostate cancer and its treatments are not the major cause of male sexual dysfunction. The two most common causes are diabetes and cardiovascular disease.

One of the more common mistakes physicians make is to attribute all medical problems to the cancer and its treatment. Men with prostate cancer often suffer from undiagnosed or under-treated diabetes or cardiovascular disease. For this reason, newly diagnosed prostate cancer patients should be evaluated for these two diseases. This is especially true if you are likely to need hormonal therapy, as this treatment can exacerbate both diseases.

Several drugs used to treat cardiovascular disease and diabetes may well have a favorable impact on the clinical course of prostate cancer, including the statins used to lower cholesterol, ARBs used to treat hypertension, and metformin used to treat diabetes. With this in mind, there should be no hesitation to treat diabetes and cardiovascular disease appropriately in men with prostate cancer.

Standard treatment of erectile function often centers on the use of Viagra (sildenafil), Levitra (vardenafil), Cialis (tadalafil), or related drugs. Erections are normally triggered by dilation of the arteries that supply the penis. This is caused by the release of nitric oxide, a powerful vasodilator. Viagra (sildenafil) and related drugs make the arteries to the penis more sensitive to the action of nitric oxide. However, this effect is not limited to arteries in the penis but also develop in arteries elsewhere. As a result, some patients experience symptoms of low blood pressure and facial flushing. Drugs that release nitric oxide, such as nitroglycerine, can cause severe hypotension when co-administered with Viagra (sildenafil) or related drugs.

These drugs can be administered in a single dose shortly before sex or at much lower doses chronically. There is some evidence that chronic low dose administration is more effective for penile rehabilitation after surgery or radiation. There is a biochemical rationale for this. Arterial health appears to be at least partially supported by chronic release of nitric oxide and these drugs may augment that effect.

There are men who do not adequately respond to oral drugs, the vacuum pump, or penile injections. In this situation, the penile implant offers a reasonable option. In skilled hands, this procedure is usually very effective. Unfortunately, too few patients select this path.

Treatment for erectile dysfunction has improved dramatically over the past two decades. Most men with erectile dysfunction after prostate cancer treatment can recover sufficient function to have a sex life, but treatment needs to be initiated in a timely fashion. It is also important to not ignore aggressive options like penile injection or penile implant.

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Patients Speak: Getting Chemotherapy

Bill R. found out he had prostate cancer about a year and a half ago. He’s been on Taxotere (docetaxel) and has just started Jevtana (cabazitaxel).

He spoke with Prostatepedia at length about his experiences with chemotherapy for prostate cancer. How did you find out that you had prostate cancer?

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Bill R.: We had just moved from California to Arizona for my retirement when I was diagnosed. I got to the point where I couldn’t pee, so I ended up at the urologist. After a bunch of tests, the urologist said, “You’ve got an enlarged prostate. You can either run around with a bag of pee tied to your leg for the rest ofyour life, or we can do a transurethral resection of the prostate (TURP) to cut part of it out.” They did the TURP, and they biopsied it.

That’s when they called me with the bad news. I had Stage IV prostate cancer that had metastasized. It was well along. It’s not been a year and a half.

What was your reaction?

Bill R: It was a surprise, certainly not expected. It takes a while to internalize it, and the first question you ask is: how long have I got? That’s like asking how to push a piece of string uphill. Nobody really knows the answer. They said that it’s very aggressive and, without treatment, probably two years or less.

What kinds of treatment did you have?

Bill R: Everything happened almost immediately because they said it was aggressive, and I couldn’t screw around. I was on androgen deprivation therapy (ADT): Lupron (leuprolide), which suppresses the testosterone, and Xgeva (denosumab). At the same time, I started chemo because the protocols at that time said the two of these together seemed to extend life.

Which chemo drug did you go on?

Bill R: Taxotere (docetaxel).

What was that like?

Bill R: Initially, I was in pretty good shape, and once I got diagnosed, I worked out even harder. I was swimming half a mile per day and more. I figured I had the strength in my body to get through this. Through the first three or four treatments of chemo, I had some of the usual effects, like constipation, occasional nausea, and stuff like that. I took a probiotic during treatment. That seemed to help. Other than that, I really didn’t have much of a problem, although, each chemo session beats you further down into the dirt. It’s once every three weeks, so you get weaker as you go through it.

Right, of course.

Bill R: They were going to do six chemo sessions, but my PSA just would not come down. They had expected it to drop close to zero, and we got down in the 20s, but that’s about where it ended up. They wanted to do two more chemo sessions, and I agreed to that. At that time, I had six chemo sessions, and the last two were pretty hard. It really did wipe me out in terms of energy and everything else. I didn’t have a lot of reaction to it, though.

I had a moustache that got so thin, I just shaved it off. The hair on my head thinned, but I didn’t lose all of it. It got very sparse, and I had little bald spots, but it was short and fuzzy. It all grew back differently. I now have a bunch of cowlicks, where before, I had nice straight hair. Chemo usually causes the fingernails to look awful for a while, and I lost my two big toenails, but they have now grown back, more or less.

The chemo started in September 2016 and ended February 2017. After the last chemo session, my PSA was still up at around 23 or 24. They worked on getting me approved for Provenge (sipuleucel-T), which is an early immune therapy. They extract your white blood cells and send them to a lab, where they do something, and then put them back in. I did that in the summer of 2017.

Over the next several months, my PSA came down. It got to a low of about 11, but that’s as low as it ever got. There were times when the chemo was bad. In the beginning, I didn’t realize how much you had to stay hydrated.

I didn’t know that.

Bill R: Yes. They offered for me to come in a day later, and they pump you full of a liter of saline.

Were you able to keep going about your daily activities or were you incapacitated?

Bill R: It slowed me down. First of all, you don’t know what you don’t know, so you’re not really prepared for this.

Chemo causes constipation, and if you’re prepared for that, it’s not a problem; you take laxatives ahead of time. But if you don’t know that, it’s a pretty miserable couple of days. From that standpoint, it slowed me down, but it didn’t stop me from going about our daily routine.

For the first month or two, I continued to swim, though not as much as I had been. I assumed that if I stayed active it would help me through the chemo. I was never incapacitated in that sense. There were a few days where either I didn’t feel well or was really tired, so I didn’t go out and pound the pavement or anything. In retrospect, it was hard to tell in the first month or so whether the chemo or the Lupron (leuprolide) was causing more issues.

Because you were taking them simultaneously?

Bill R: Yes. You’re doing everything at the same time. I guess, in retrospect, I slowed down and had a few days of down time. But it didn’t stop me from doing what I wanted to do.

I went out and bought a custom chopper motorcycle, and after my Provenge (sipuleucel-T) treatment in the summer, I took a 3,500-mile ride up to Sturgis, out through Yellowstone, and home. Two weeks later, we spent a month in Europe. It was hard for me, but maybe it wasn’t as hard on me as it might have been on others, simply because I was in pretty good shape when I started. If you’re not in good shape, it could be tougher. They give you some steroids to help you through this, and in the beginning, it took a while to get the steroids adjusted. They gave me too much, and I got mouth sores for a while. Once the steroids got adjusted, that was fine. The worst part of the whole thing was after it was over. Inside of a week, I started to retain water. I put on 20 pounds, and it was all water. I’m not a big guy at about 150 pounds and 5’8”, but I looked like the Pillsbury Doughboy. Living in Arizona, you run around in shorts all the time, and even the cargo shorts that I wore were so tight that they’d leave marks on my legs.

Were you able to start exercising again after everything was done?

Bill R: Yes. I started swimming again and working out. When I did the Provenge (sipuleucel-T) in the summer, that wasn’t so bad, I guess. It’s something that most people don’t want to go through—let me put it that way. There were days I was extremely tired and didn’t feel well. I was able to get back on my feet, exercise, and lead a normal life.

Doing that again, with what I know now, it probably would have been less of an impact on me. That’s the challenge for a lot of people. You go into this, and you don’t know what you don’t know. The doctors don’t really know how you’re going to react to some of this either.

Right, because everybody is different.

Bill R: Exactly. They had to adjust things like the steroids, and then things were better. They expected my water retention. I had some neuropathy damage in my feet, which is permanent. When I walk around, I feel like I’m walking on water bubbles all the time, so I’m not really stable. That took a while to get used to. Staying active will make you feel better, even if it’s just going out for a walk every day, so you’re not sitting there thinking, “I’m going to die, and this is awful.”

Right. It’s not good for anyone to dwell on that.

Bill R: Right. As soon as you head down that path, you’re toast. You’ve got to find a way to live your life. It forces you to get all your affairs in order because you realize that you’re going to pass away before you expect to. I’m starting Jevtana (cabazitaxel) in a few months because the cancer has progressed.

I’ve heard people can tolerate Jevtana (cabazitaxel) a little better. The side effects are not as severe as Taxotere (docetaxel).

Bill R: That’s what they’re telling me, that I shouldn’t expect things like water retention and so on. I am going through that now, so the doses are once every three weeks for six rounds. We’ll see how that goes. But it is what it is. I tell everybody if you live long enough, you’re going to get prostate cancer.

That’s actually true.

Bill R: It’s only a question of when. If you get it like I did, earlier in life, it shortens your life. But if you get it when you’re 90, nobody knows and nobody cares. Hopefully I’ve helped people a little bit.

A lot of it is mental. If you swear that this is going to be miserable, everything you look at will contribute to that feeling. Whereas, if you’re determined to get through it with a positive attitude, it’s not as bad. There’s a lot in the mental side that really helps you get through it.

Join us to read the rest of our August conversations about chemotherapy.